Commissioning for Outcomes by Dr Peter Nightingale GP Advisor End of Life Care Macmillan Cancer Support

Pre-Event Abstract
End of life care in our country is close to the best in the world which is something we should be very proud of. We face challenges to maintain quality with an aging population, increasing frailty and limitations on resources. The key issues identified by the Kings Fund in April 2013 are still priority areas today:-

facilitation of discharge from the acute setting

rapid response services during periods out of hospital

centralised co-ordination of care provision in the community

guaranteeing 24/7 nursing care

The wider use of Advance Care Planning to personalise end of life care and considering end of life care as ‘everyone’s business’ and nurturing the development of compassionate communities may have a role in managing end of life care as the need increases. This presentation presents the case for this, providing examples of how commissioning approaches can be used to improve end of life care services.

In his presentation Peter made the following remarks;

"Arguably we are still the best in the world at this"

"We know what good looks like in End of Life care"

"Why is there this variation across the country, why do some have 24hr community nursing care and others haven't?"

"When you look at what is frustrating for patients it's disjointed continuation of care"

"GP's really do care about End of Life care but given current restrictions we can't ask much more of them right now"

Involving patients and carers in the end of life commissioning process by Barbara Pointon MBE Ambassador The Alzheimer’s Society with Linda Pointon (M.Phil) Clinical Research Project Manager University of Cambridge

Pre-Event Abstract

Involving End of Life patients who also have dementia in the mild or moderate stage, and who can express their own views, has to take into account the extra difficulties it will produce – whether in initial assessment or in complicating care. All End of Life services need to be dementia-sensitive. The carer, or ‘significant other’ who knows the person best should be involved as a true partner in care, whatever the setting, creating a triangle of trust between the patient, carer and professional, which in itself improves caregiving.

When someone is dying from the physical ravages of advanced dementia , decisions about place of care and personal wishes should ideally have been made years earlier. GP commissioners have a role to play in identifying carers early and help them to broach those difficult conversations. It is notoriously difficult to predict how long a person with severe dementia has left. Artificial time-limits to access to palliative care are not workable, so services have to be flexible.

Commissioning practical support for carers of people with advanced dementia revolves around having the right equipment for the job, access to expert dementia nursing advice and good quality, supportive paid staff to assist the carer. Some normal medical and nursing procedures for physical care may need to be adapted. In addition, the patient’s psychological, sensory and emotional needs come to the fore, which together require both competency and compassion in caregiving.

Care is complex, many specialists may be called in to advise. A case is made for an expert advisory dementia nurse at the helm who could probably solve many of the problems and also offer emotional support to the carer. Integrating the care would simplify the picture and probably reduce the cost.

Commissioning for the carer’s own needs should contain tailored information and practical advice, emotional support, regular breaks and periodic health checks. Aspects in the dying phase are discussed, including making difficult decisions and avoiding hospitalisation, Many long-term carers find it difficult to grieve at death and may have a very delayed bereavement shock –and would then welcome counselling. Good end of life care in dementia at home puts the patient at the centre and depends on expert advice and seamless partnerships between Health, Social Care, the voluntary sector, the carer and the family. Barbara and Linda's full presentation